I'm a new member,forgive me my long introduction!

[Guest guest]

Hello list members,

I've just joined to your group but I feel I should have joined here before.I

would like to give a short summary about the struggle with my son's health.I

would appreciate if you could make a few suggestions.

My son will be 17 next month.He was diagnosed with autism and developmental

delay at the age of 3, he had some spontaneous language in both English and

Turkish (I am Turkish).My suspicious about his autism started when he had the

first Diphtheria, Polio, Tetanus vaccinations which were given at the age of

2months, 3 months and 4months. Because after that I had a concern about his head

size,getting bigger, it was OK when he was born! Then he had MMR when he was 18

months, refused to hold hands,you know the picture,similar regression possibly

which everybody witnessed.

When he was five he had the second MMR,after a month of this ,his expressive

language was in a mess, confusing all the words calling me daddy, cat..lion..so

on.We started Gluten free/casein free diet at the same time.Before the diet, he

had limited eating habit but he had nicely developed bone structure,looked

healthy after the diet he gradually getting slimmer despite he was eating

everything !.Then he developed sensitivities to certain food..His expressive

language ,spontaneous language needed to be worked on hard to build again in

intensive ABA sessions,he became passive and quieter despite the early

childhood.

When he was 9 he had a gastrointestinal infection and hospitalised,severe

diarrhoea,weight lose,temperature.He had the blasto hominis parasites.Following

the second year in abroad, this episode repeated, he was once again in the

hospital,for the same problem.The third year nothing happened,because it was in

his system!His health ,his weight gain was poorer and poorer..Today ,I am still

trying to find a total celarance of this parasitic infection on his system..

We had several biomedical interventions.Mainly focused on his gut problems.Once

we had the challenge test with DMSA as my Dr insisted,It didn't show anything.It

really surprised me because I had some amalgams when I was pregnant,he had all

early childhood vaccines..I was sure that he was toxic, he was presenting

neurological problems.So, the test didn't convince my Dr to offer a treatment

and I was so timid to start with chelation.We tried some herbal stuff.

One condition started at the same time when the gastro problems started, that

was anxiety, hyperventilation which turned out very chronic medical condition

when the yeras went by.They called it behavioural, he had MRI but didn't show

anything.He had a few EEG after my suspicion about his staring attitude but EEG

didn't show anything!

Last year my Dr gave him some supplements to increase his weight gain, reduce

hyperventilation and anxiety.In May 2009 Dr recommended chlorella 8 tablets, to

support liver function and Gilbert Syndrome...ALA100mg a day,Pea Protein powder

(one scoop ) day which has high glutamic acid(2000) together with some other

supplements which addresses his gut problems.He has been on this ones since May

to November in 2009 then he had the first full blown seizure and taken to the

Emergency section.Since then he had nearly monthly seizures and went to the

Emergency Section.I stopped all the supplements which I mentioned them above and

replaced with B6, taurine,MG, several others,recently added carnosine (I

believe absent seizures have disappeared since we added this one) He has been

put on Sodium Valproate after the third one which was bad enough to persuaded me

to start with the medication.The good thing is he is still on the same low dose

(10mlX2) a day and seizures have stopped at the end of May 2010.He had several

tests, include testosterone ,none of them showed any particular reason for his

seizures.He had sleep EEG, didn't show anyting and they didn't call him

epileptic but epilepsy like seizures! that's the phrase they used..He is 176 cm

height but hardly reached 49kg.

They are suspicious about his chronic hyperventilation..which may triggered the

seizures..He had MRI in the past, didn't show anything..Once again, I've become

suspicious about the toxicity perhaps he was having,perhaps tests didn't show

anything.In the past he had porphryrin test but showed very little

mercury..blood tests showed the same,DMSA showed nothing.!.

He grew slim,presenting neurological problems, he has more receptive language

and comprehension rather than expressive language.He has dislexia,

dispraxia,fine motor problems (having said that he can play piano in chords! but

can't use zips or buttons!).He can also write ,type and read..He has lots of

self stimuli behaviours,concentration problems.I am very dissapointed to see him

having a medical problems like the parasites in his gut despite treatments,

hyperventilation, concerns about his bone development. depite of huge effort of

keeping biomedical intervention since he was five!.

Do you think that chelation may be too harsh for a child presenting very fragile

state of health,poor immune problems can he take the difficult route of

chelation?Do I have to do some tests prior for the chelation but as I said, they

didn't show anything in the past.

I am in a big dilemma..All those years, our intervention with biomedical is not

successful,either my son's problems are really complicated which is true, he is

a hard case but also lack of understanding and knowledge which doctors are

having for treating medically sick children with autism.

I am very sorry for this long mail but having a picture of my search for

questions and answers I needed to write this.English is my second language,that

one also made the task harder for me.

Once again, forgive me for my long mail.

All the best

Nevin from London